Hello everyone, first of all I would like to thank all the participants and all the stakeholders and members of the AMAVEA association, of the titanic work they provide in order to inform all the victims, of what can be called drug intoxication.
I would like to tell you about my testimony, but for that, you have to learn about my medical journey; In order to enlighten you a little more on my testimony.
Here, my name is Kheira, I am 50 years old, 3 children.
“First drug poisoning. First injustice. »»
Before I developed the symptoms linked to meningiomas in 2010, I already underwent into an poisoning to a drug, during hospitalization for cerebral phlebitis in March 1990, I was barely 20 years old.
The medication implicated is penicillin. This poisoning has a name: it is Stevens Johnson syndrome, diagnosed in May 1990.
I knew later that it was not the phlebitis that caused this syndrome, but indeed the antibiotic prescribed I do not know which doctor of the hospital.
I attach you a link to better understand this syndrome ( http://www.avimedi.net/ ).
Then begins, a long journey, of painful care.
Following this poisoning I have kept ocular after -consolidation, which are relieved by the wearing of scleral glasses, (since 2010, renewed every year).
Very restrictive treatment. “Fortunately” that my visual impairment was recognized, then 100% supported (meager consolation).
This is followed by an administrative battle for my disability (in 1993), I could not resume my professional activity. Then a recognition invalid at 80% late at the MDPH in 2013.
First ALD
First handicap
After all a research journey to better understand this syndrome (19 years). 19 years of guilt. A lot of time forever lost.
In 2009, thanks to Avimedi's responses (the only information site dedicated to the victims of this syndrome, drawn up by Mr Devaux) and after having gathered the information to start compensation procedure, first blow.
I asked for access to my full medical file in relation to this hospitalization, with a view to compensation in 2009.
Response from the hospital: “ We destroyed your medical file. »»
"We destroyed my medical file" long before the legal period required to keep it or put it back to the patient, or, if it is not claimed, it is always destroyed with a very specific time. As a result, I have, as best they can, live with this first injustice, for lack of recognition as a victim of drug poisoning.
Can we speak of negligence ???????????
It's the double penalty.
To date I have regular follow -up with an ophthalmologist, trained in my pathology.
I had to move forward despite everything.
“Second drug poisoning. »»
I took Luteran 10 mg for more than ten years, because I had my very irregular menstrual cycle and a very severe acne since my adolescence, and the Luteran was prescribed to me after the delivery of my 3rd child (in 2006), by my gynecologist.
I was diagnosed: in December 2018 (following the realization of an MRI, prescribed by my attending physician) before the appearance of certain alarming symptoms in November 2018: -
- Electric discharge felt at the right temple.
- a vertiginous state in constant.
- Decrease in visual acuity, poorly evaluated because I already had after -effects at the eye, always linked to my 1st drug poisoning.
- More and more nausea.
- Violent headache increasingly frequent, and intense, which had nothing to do with the migraines that I had known so far.
- a vertiginous state in constant.
- Decrease in visual acuity, poorly evaluated because I already had after -effects at the eye, always linked to my 1st drug poisoning.
- More and more nausea.
- Violent headache increasingly frequent, and intense, which had nothing to do with the migraines that I had known so far.
- and above all, memory disorders (I avoided twice, thanks to the intervention of my relatives; 2 fires, in November then in December 2018).
- Without forgetting the humor disturbances of anxiety then, a state of total depression.
- Without forgetting the humor disturbances of anxiety then, a state of total depression.
Very very difficult moment, because I did not appear in front of those around me, for fear of worrying them more than it was already.
I tried to reassure them permanently.
MRI has highlighted 3 meningiomas, including a voluminous (4.6cm), located at the right temple, operated in January 2019, as well as a very important brain edema.
The day the diagnosis was made in December 2018, I received like a huge blow, like a bomb that has just burst in front of me. I stayed without reactions, it was incomprehensible to me at the time.
Everything was jostling in my head.
I was unable to ask the radiologist to explain this diagnosis to me as anger suddenly invaded me. I no longer listened, I was no longer heard.
The one and only question that came back to me at this moment, then the following days and weeks is: how with regular follow -up with a neurologist, and other specialists in the medical profession that I had consulted, we can missed that …… ..
Then I collapsed in "tears", a luxury for me, (although I no longer secrete, due to Stevens Johnson syndrome), on the radiologist's desk.
I felt very alone in front of this misunderstanding and completely lost and above all very shocked.
I had only retained the word tumors. I didn't know what meningiomas were at that time.
I went home, despite myself.
I informed my companion and my children with a lot of media and hesitation. They remained dazed and then struck.
How to explain to them, what me, for lack of information, I could not understand, myself. Then I remember sending waltzing the MRI through my living room.
I was isolated from everyone for some time.
I was taken care of at first the next day, by a neurosurgeon, in Tours, the professor saw (my doctor attending was very reactive in front of the emergency, and contacted the neurosurgeon the same day, not to mention that he asked at the same time, 100%care (ALD).)
The neurosurgeon who received me asked me several questions about the treatments I took.
She announced to me that taking the Luteran was the trigger factor, which has favored, nourished and fueled the appearance of meningiomas and that the more prolonged the treatment is, and the more mass, hence the size 4.6cm when it was highlighted in my case.
So immediate stop of the Lotéran.
Then she explains the progress of mechanically surgical management, with little information in the end.
I was faced with making the decision in 10 seconds to accept the intervention despite all the risks that this included. The edema being too important, I risked at any time the epilepsy crisis, the coma and the consequences, the M….
The intervention was the only alternative, which I thought at the moment.
I thought of my children a lot, then I accepted.
I still couldn't understand.
It has passed 3 weeks between the 1st consultation and the date of the intervention.
I was put under Medrol, in order to absorb the important edema, hello undesirable effects, I was as shot, but given the context, I had no other choice according to my attending physician.
I was very anxious permanently, by the fear of no longer being able to keep control.
It has become one more daily fight.
Several members of my family wanted to accompany me, in order to be by my side on the day of the intervention, but as I had a lot of apprehension, concern and that above all I did not know at all what would be the result of this heavy intervention, which lasts more than 6 hours. So I went alone and full of anxiety in the hospital (this one being almost 2 hours from my home), after having put order in my papers and gave instructions to my loved ones.
Although I expressed the wish to meet a psychologist, during hospitalization, because I no longer recognized myself, I was not heard.
The intervention took place in January 2019 , it went well. I saw the neurosurgeon again the next day, he was reassuring, but I admit, I was lost in anxiety.
Then I feel the effects of bizarre sensations, numbness and tingling of all my limbs, jaw pain (still present), I had the impression of being misshapen under this huge dressing on the head (feeling of having a large helmet on the head and being passed under a compressor roller). I even believed that my head had been reduced in porridge.
Then came the day when I was removed the dressing of my head (I took 3 days before agreeing to look at me in the mirror) I had not been given information on the aesthetic side that could result.
I had my face swollen with a huge right temporal hematoma (absorbed in a few days).
I had to adapt to this state and regain confidence despite everything, over the days.
I returned to my home after 6 days of hospitalization.
I note from day to day, that there are a lot of neuropathic pain, then a loss of sensitivity of the limbs (which means that at the level of the hands, everything escapes me, and I often lose the balance) still present to this day.
But there is also the problem of speech, the speech therapist carried out a complete assessment, which detected a cognitive involvement.
Thereafter, there was post -operative care, so much feared, the ablation of the staples (I had 52, ablation in 2 times).
The dialogue with the others was very limited, because I constantly was looking for my words, my sentences were unfinished, it was very exhausting to manage with dizziness, and at the same time depressing.
The crises of tears followed, then little by little I become more sensitive than usual.
Loss of taste also, (again to date) and hearing, always nauseous and fatigue that I can no longer control and manage.
There are also insomnia (I only slept 2 hours per night and as much the day interspersed with very long awakening moments). Which today have hardly improved.
I sometimes feel, especially during the moment of rest, like an electric discharge at the level of the limbs, I do not explain it to myself.
The swallowing is difficult, I have the impression of suffocating especially at the lying rest (even today).
The headaches have become daily, which manifest themselves in the middle of the night, to intensify upon waking.
The only analgesics that suit me are coded dafalgan (not supporting tramadol, like many patients).
The only analgesics that suit me are coded dafalgan (not supporting tramadol, like many patients).
I have always refused to take morphine, anxiolytics, antidepressants and rivotril, prescribed by the neurosurgeon (in January 2020).
Because I had a weaning of these drugs in 1993, following the first drug poisoning, which put me down. A very painful moment. In any case, I didn't want to live this.
I question myself more and more ...
What impacts have the 2 meningiomas, remaining small sizes, which are inoperable? Apart from they are under surveillance (realization every year of an MRI) I have no other information.
Is there an impact on convalescence?
Today, I see that I find it hard to recover 20 months from the intervention.
I especially have this feeling that I miss something, that I did not find after the intervention.
The organization put in place to find a semblance of life has become very difficult.
Outings, activities, all of everyday life are subject to physical and legal conditions day by day. To the best of my form, if I start any activity, after 2 hours, I have no choice but to interrupt it; So much the fatigue catches up with me immediately and awakens neuropathic pain, dizziness and nausea.
Despite the rest time that follows, then impossible to resume the pace.
I was especially faced with what I call, the emotional elevator, with ups and downs. It is enrageing, but I continue to take it upon myself, in order to reassure my loved ones.
I started sessions with the speech therapist in April 2019 (to regain concentration, in order to improve memory. The path will be long , but encouraging, still followed to date, I finally regain confidence.
I finally consult for the first time, a psychologist, in July 2020, to understand and calm down.
To date, I gradually resume energy, I know that recovery will be long.
I never gave up my arms, I continue my fights in front of the consequences.
Despite regular monitoring at a neurologist (from 2010 to 2018), for a history of cerebral phlebitis in 1990; He did not at any time requested complementary examinations, faced with the symptoms that I felt in 2010. To know increasingly violent headache with nausea, diffuse pain on the whole body, loss of memory, dizziness and above all a permanent fatigue, not to mention mood disorders.
This neurologist went to the "fibromyalgia diagnosis and then that of Lyme , linked to permanent stress, in 2014, without however validating them with more advanced exams. He even insinuated that all of them happened in my head. Basically under hearing, that is psychiatry ????
What aberration, when you see the real cause of these symptoms ! He was indeed there, the link with the meningiomas.
I conclude, what negligence.
For any treatment, he prescribed vitamin D me, and certain anti inflammatory drugs and ibuprofen etc ……, not to mention the fundraising for migraines.
Faced with the permanent pain I took more and more ibuprofen 400mg, 3 times a day from 2010, until diagnosis in December 2018 ... by the rest, I refused all follow -up with this professional, who in the meantime, was aware of the diagnosis.
It was radio silence. No contact to request the evolution of my state of health . As a reminder, I was still his "patient" hence my great anger when the diagnosis was announced.
Yes, it was indeed in my head, but it was the symptoms of the evolution of meningiomas.
It was for me a moment of loneliness, very painful anger to cross.
I had taken it upon myself once again, and I said to myself: you will get up, you have already done it.
How?????
I was determined to know the truth.
And I found it, a very big thank you to the Amavea association.
I realized that I was not the only one, as we would like to make us believe.
This is my testimony Emmanuelle, I hope you find it rich in information and that it will be published, and that it will above all allow to make a great step forward, in the steps that we take.
As you can imagine, I put all my energy there.
But I know that with us all together, hope is reborn.
Thanks again to Emmanuelle, who allowed the association to see the light of day.
We all need answers, that's what binds us.
Let's stay positive, and determined, it is one of the best remedies, faced with the fight that awaits us.
Other testimonies here
